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I May Be 1 of 5 Million With Lupus, but I Am Far More Than a Statistic

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Medicine can’t tell you much about lupus, but it loves to throw out facts. If you Google lupus right now, a range of statistics will pop up. According to Monash University, lupus affects five million people worldwide. It’s most predominate in the 15-44-year-old age bracket, and 90 percent of those who have lupus are female.

The thing I hate about these numbers is that while definitive, they’re cold and don’t tell you anything about the people who make up these statistics.

Being diagnosed with lupus meant I was forced to face my morality. It meant that life is no longer a never-ending journey where I don’t know what’s coming for me.


Somewhere along my path a signpost has been stuck in the road, signifying there’s now a definite end point to my life. At 21, I know that one day I’m going to die. And it’s completely probable that what’s going to be the root cause of my death is the very thing I fight against every day. As dire as that may sound, I’m as at peace with that information as possible. It’s just fact.

But something I do struggle with is the numbers. My passing will make me another piece of quantitative data in relation to lupus. I will be just another person lost to this illness that wreaks havoc on so many, yet we know so little about.

Those numbers won’t tell you anything about the mass of amazing people who live with lupus, fighting a life-sucking condition every day of their life, only to one day lose an ultimately un-win-able battle.

Numbers can’t tell you how many nights we fight insomnia, how many mornings we struggle with just waking or how bouts of anxiety and depression plague us.

They can’t tell you how many of us have reached out to support one another, found camaraderie in shared hardship and created strength out of what should’ve been weakness.

Numbers can’t tell you how many of us were forced to mourn our old selves, how many careers weren’t pursued or how many relationships suffered and broke down at the hands of our illness.

90 percent is such a telling number, such a large majority. But one number can’t tell you that many of the women who make up that 90 percent probably struggled with pregnancy. And if they were successful, they lived in fear of passing on their greatest struggle to their greatest love.

There are five million people in the world with lupus. Five million people who get up every day and refuse to give in to a never-ending struggle. Five million people who deserve to be remembered as more than just a statistic.

I don’t know what number I am in that five million, but I do know it can’t tell you the best things about me.

It might be the number 4,789,199, but that won’t tell you how I refuse to bow down to my illness in defiance, in honor of the girl I mourn and used to be. Maybe it’s the number 826, but even that can’t tell you how it feels to achieve my goals, despite the odds being stacked against me. Or maybe it’ll be 134,222, but that won’t ever be sufficient in outlining my accomplishments and my struggles.

All I know is the most important number, as of today, is 347: that’s the number of days since my diagnosis and the number of times I’ve woken up and taken my life back from my soul-devouring illness.

I’m more than just my illness, more than a statistic could ever tell you. I’m more than just a number.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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Thinkstock photo via RossHelen.

Originally published: May 25, 2017
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